Beyond the Memories: Tobit Tom's moving one-man play shines light on sickle cell battle

Award-winning performance artist and actor Tobit Tom takes to the stage on August 1 and 2 at Braeburn Gitanga Road’s Austin Room to tell a personal story about brotherhood, family, illness, fear, hope and resilience.

His one-man play titled Beyond the Memories explores his relationship with his older brother, Elvis, who has lived with sickle cell disease, their relationship, and Tobit’s journey in the performing arts.

The story also includes other members of his family: his parents and sister. All proceeds will go towards raising funds for Elvis’ surgery and treatment in India.

Tobit and Elvis are five years apart, an age difference that enabled them to grow up together. Tobit recalls that Elvis was in his life from the time he was born, and he taught him how to play video games and took him to and from school.

He first became aware that his brother was ill while he was in primary school, though he didn’t fully understand sickle cell disease until he reached high school.

“As a child, I wondered about the medication my brother took every day. I noticed that his eyes were sometimes yellow and that he was discouraged from engaging in strenuous activities,” he recalls.

As Tobit grew older, hospital visits were more frequent. During his high school years, Elvis could spend as long as a month and a half in hospital during the school term. That is when Tobit understood more and more about the challenges of living with sickle cell disease and the effect it had on his family.

He says that the idea for the play was also driven by what he sees as a need for increased awareness about sickle cell disease.

“Sickle cell itself does not create as much awareness compared to other health conditions. I felt like giving it a show would give it justice,” he says.

Having witnessed his brother navigate the condition over the years, he says that he wanted to tell a story that could also offer hope to people facing difficult circumstances.

The one-hander is based on his real-life experiences, with some theatrical elements. He portrays his brother as a warrior with the illness and pain represented as a battle. These ideas are expressed through dance choreography, while the events stem from the family’s experiences.

Tobit wrote and directed the play. He consulted award-winning director and actor Mugambi Nthiga, with whom he workshopped and edited the production. Ken Hillary is the assistant director to provide an outside perspective and help shape the performance.

Tobit presents the events from the perspective of a younger brother trying to understand what his older sibling is going through. The play depicts memories of seeing Elvis during health crises, taking medication and spending time in hospital. It also explores the role Elvis played in Tobit’s upbringing.

“He taught me a lot of things. Many things that I have learned came from him. Even when he is in pain, he is in involved in my life and career. He wants to know and encourages me,” he says.

This is why Tobit felt that the story needed to be told from his perspective.

Elvis has also been his main source of support throughout Tobit’s journey as an actor. He describes his brother as his best friend and the first person he calls when he gets a performance opportunity.

After university, when Tobit was attending auditions, Elvis helped him with transport money and rent. He was also among the first people to know that Tobit wanted to become an actor.

He chose the one-hander partly as a personal artistic challenge. He also felt it gave him the freedom to show different stories in an unconventional chronological structure of oscillating between present-day experiences and flashbacks.  

“A one-man play is tricky and demanding. It poses a challenge of what I can do on stage to keep the audience glued. Since I’m mostly doing this alone, I’m biased on some events,” he says.

This is where, he explains, Nthiga came in to offer perspective that made Tobit see what would work theatrically and what would keep audiences engaged. Even though Tobit has written plays before, Beyond the Memories is his first one-hander.

Recollecting his family’s experiences has not always been easy. Some memories, like depicting his brother in pain, he discloses, were difficult for him to write about.

“The memories, when I look back, encourage me and inspire me. My father’s calmness in dealing with the family’s circumstances encourages me too,” he says.

His brother’s experience, he reveals, has taught him about hope and the importance of maintaining a strong mentality during difficult times. It has also taught him to keep pushing even when he faces challenges of his own.

He explores themes of family, fear, hope and self-reflection to show how his family members have supported Elvis. Fear comes in when there’s uncertainty of having him in hospitalised, while hope is a constant feeling. He says that his achievements as a performance artist and the moments of hope in his brother’s life is also in the play.   

“The production uses black and white imagery to represent this contrast. Where there is fear, there can also be hope. There will always be hope,” he says.

He uses theatre to raise money for Elvis’ treatment after his doctor recommended a fundraiser, with a target of Sh8 million. Tobit thought of using his acting talent and

recognised the reach of social media and his role as the family member most comfortable using online platforms to mobilise support. The family has supported the production by helping pay for the venue and promoting the show.

Through Beyond the Memories, Elvis will watch him perform for the second time, while it will be the first time his father sees him perform live on stage.

Tobit hopes the play will encourage more conversations about sickle cell disease. He notes that many people still don’t understand the condition and its impact, while the cost of treatment and medication is high for families. He implores government and insurance providers to help families manage the cost of care.

He hopes the play will help the family move closer to its fundraising target while also reaching people who may be able to contribute or help amplify the cause.

“I hope to stage it many times to create more awareness around sickle cell anaemia. I was advised that it has the power to become a movement, not only a play,” he says.